The Natalie & Alice Fish Story

We are the Fishes. In 2011 two of our five children; Natalie and Alice were diagnosed with a rare gene disfunction called Leaky SCID (Severe Combined Immune Deficiency). Their condition is so rare that only two cases are reported in the U.S. each year. Both girls have endured much, and have spent most of their young lives in and out of hospitals due to common illnesess a healthy immune system would overcome. The required treatment for our girls is a bone marrow transplant.
Although the new marrow could mean a normal life for them, it will be a long and arduous road. This blog is to share our experience as parents and the courage of our children.

Monday, August 26, 2013

News Clip of Bobble Head Blair--Clinic

The first video on the link below is the story KSL reported, the second video was produced by Andrew Smith.

...also I loved the written part of the news story about Alice's donor Michelle.


Clinic today was good, Alice only required platelets.  This is great news.  The steroids are beginning to suppress her unmanageable cells.

Hemoglobin 9.8
Platelets 13
ANC 400

We talked more about the preparatory regimen Alice will receive for her second transplant.  She will receive 21 days of prep. in which all drugs will be new to her.  I will include more details later regarding the chemo therapies that will be used.  Originally the doctors discussed using low dose radiation as well...this has been changed, and there will be no radiation used.  We are happy with this decision.

We hoped to use Alice's first donor again, as she is more than willing to donate twice, however, now that Alice is CMV (Cytomegalovirus) positive it is better that we use a donor who is also CMV positive (the risks of CMV spiraling out of control are great if the host and donor are not the same).  We will have more information about her second donor later.

She and I had some good times today in usual, she kept me laughing.


It makes me sad to think these curls are all going to be gone soon.

This sparkly pink hat is just right for her...she picked it out from the hat rack.

Um...this is what I saw when she called my name, I had been reading...she drummed this up and laughed so hard when she later saw this picture I snatched of her.

We love the crafts....silly puppets!

Receiving Platelets.

Sunday, August 25, 2013

Blair's Space Balloon

Hi everyone...this was a special project for our family to celebrate Blair's heroism, and to promote bone marrow donor awareness. The footage of space turned out to be spectacular, and will be shown on KSL Channel 5 at 10pm tonight.  Also we want to especially thank Alice's donor Michelle.  If you get a chance watch, share and sign up to be a hero at

Saturday, August 24, 2013

Clinic-School Starts- Natalie Raises Her Wish Star

Tune in to Channel 5 KSL for the complete space journey of Bobble Head Blair.  Sunday Aug. 25th at 10:00 p.m.  Those who are not local, we will post a link of his space journey and the news story on our blog.  It's so cute!!!

Monday--August 19, 2013

Alice had clinic today, she received Platelets and IVIG.  It was another long day but again she did well. Tyler spoke with the doctors a bit about Alice's up coming regimen.  The team decided to not take the radiation/chemo route; Just chemo....however, it's not your average chemo.  It will be aggressive and it will be hard.  Our team here in Utah is in discussion with the doctors at UCSF regarding the subject.  We are hoping for the best.

I stayed home to help get things ready for the older kids to start school in the morning.

We officially moved over the weekend.  We are starting to feel more organized and ready for school to start. We have little furniture left in our name and therefore the entire move was quite manageable.  We stretched it out over several weeks, which made it much easier...little by little it came together.  Many thanks to everyone who helped as we made the transition.

Tuesday--August 20, 2013

Natalie, Matthew and Blair started school today.  It's hard to believe that summer is over and school is back in session.  They have great teachers and already know a handful of classmates.

Natalie will go all day, hopefully she will manage fine.  If it becomes too hard for her physically then we will consider cutting the day shorter for her, but she seemed to have plenty of energy all summer long.

First day of School 2013!!  Third-Natalie, First-Blair and Second-Matthew.

Wednesday--August 21, 2013

Natalie completed her Wish journey tonight by raising her star to the ceiling of the Wish House.  She has been anxious to do this for a long time.  She was excited, but hardly shows it in the video and pictures.  She has a funny way of showing emotions.  In fact, she came down with a fever literally one hour or less before her star party.  We are not sure why she had a fever, it may be her ears or just something random passing by.  Luckily Aunt Karina came prepared with some fever would think we would have been more prepared.
A nice welcome coming into the Wish House

The gardens...everything about the wish house is designed after a child's description of what a child thought it should look like.

Alice and her buddy cousin Cooper

Nicole and Natalie, this is inside the wishing room...only one with a key can enter.  Natalie was so proud to be the one with the key who could unlock the door for all of us.

Kenzie, Evie and Addie having root beer floats.

Far table: Blair, Luke, Lizzie, Jordan, Matthew and Kymball.

Cooper, Jessica, Roslyn, Garrett, Karina, Adam and Bentley baby.

Our awesome Make-A-Wish friends, Ann Marie and Daniel.

A dreamy starry night pillow case from Grandmother.

Star Fish from Grandmother.

Natalie wrote some things on her star.  She can always come back and find her star among all the others.  The cute little fish she drew will be a nice symbol to stand out in the group.

And there it is...the one with the ring and yellow string attached to it.

Thursday--August 22, 2013

Natalie missed school today, she had another terrible fever and headache with chills in the night.  She ended up sleeping in our bed to stay warm between Tyler and I.  Once the Tylenol kicked in she was okay.  It's always strange trying to piece together what might be going on in her body.  She will see the ENT again soon and this is when we plan to schedule a time for her to have tubes placed again :-(

It might be the only thing that will help with the fluid and pressure build up.  We worry that her natural drain tubes don't work much at all.

She is so sweet...and such a trooper.


Thursday, August 15, 2013

Long Day

Monday brought a long day for both Natalie and Alice. Alice's numbers were down so both a platelet and blood transfusion were needed to get her through the week. I was expecting the conversation with the doctors to be one of them emphasizing the need to get Alice in for transplant as soon as possible. It turned out to be thus, however they said a conversation was needed to be had with the California doctors to ensure that everyone was on the same page, and afterward they would have a more concrete date upon when they will bring Alice in for transplant. It took a few hours before they could match Alice's blood, so we did not get out of there until after 5:00 p.m. Natalie's appointment was not as long as Alice's. She had some blood work to do, however, Lisy had to take her back the next morning on Tuesday for the labs because Natalie had already taken her morning meds and Lisy didn't realize that one of the labs was for a trough level. Lisy said she did well when she did her blood draw. Natalie really has been doing better with the process of giving blood, labs are less often and this helps. She may or may not need tubes in her ears. We will know more next week.

 No matter how many times we do it, it's always strange to me when we finish up late at clinic. We arrive in the morning when things are busy and by the time we come out of our room the halls are quiet, lights are off and most everyone has gone home for the day. Its at that time that I often reflect on how many times and how long we've been coming here. When I exit the clinic door I will often look to my right and to the end of the hall. My eyes will typically meet the glow of afternoon sunlight through the conference room windows and couches that are often inhabited by silhouettes resting or talking on the phone. I always assume they are family or friends, catching up on life before they lovingly and dutifully walk back into what I cannot see from my view around the corner; which are two automatic doors leading the way to patient rooms. I then reflect on how many times I have and will be one of those silhouettes in the near future. I also wonder if there have been many before who have watched me catch up on life and walk back in for what is likely to be a long night of doing your best to make your child as comfortable as possible.


She feel asleep like this.

Brennan and Natalie
Sunday we had dinner with the Clark family.  They are the homeowners of the Parade of Homes #16 in Bluffdale.  This room was designed Hawaiian recognition of Natalie's wish.

Brennan gave this awesome Ukulele to Natalie...she loves it. 

A tree in the playroom at PCMC.  A whole bunch of wishes by children.

I especially loved this one.

Making ice cream in the playroom....passing time until Alice's appointment was over.

The ice cream actually tasted good.

Made a trip to the Beehive house for a tour.

We had enough time to do something fun while waiting for Alice and Tyler.  No siblings are allowed in clinic..Natalie and Blair would not have wanted to be there anyway.

Had some lunch at the Lion House Pantry.

Wishful thinking.  She had a wonderful gluten free pork and potato dish.

Next day, Tuesday. Matthew and Jerome came to give Natalie some moral support.

Friday, August 9, 2013

A Busy Week

August 2, 2013--Happy Birthday Evie!

Evie turned 2 today.  She felt so special, she was aware that all the birthday wishes meant something.  Evie is a sweet little thing...WE LOVE YOU, EVELYN!!

August 3, 2013--Hero Party for Blair/Alice has a fever

Today was a special day for Blair...7:00 a.m. bright and early we had a hero celebration for Blair.  Soon we will post more details.  KSL will air the celebration and a bit more the third or fourth week of August.  Once it has aired, I will post the entire bobble head journey and celebration on this blog.

My sweet friend Liz took this picture at the celebration...I love it!

Alice came down with a fever this same morning.  She complained that her ear was hurting.  I called to Salt Lake.  We decided to watch and see if the fever would break on it's own.  It did!!! She recovered from her ear ache and we stayed home.  This was a bit surprising for us.  Later each of the kids had similar symptoms.  It was a fast little ear ache.  Sharp pain, fever, and then nothing.

August 4, 2013--Celebration for Evie and Alice's Birthday

Amberly invited us over for Sunday dinner.  It was yummy--as always when Amber cooks.  We decided to celebrate the little girls' birthdays together as Alice would be in the hospital for her birthday and Eive's was during a busy weekend for us.

Four candles on one side and two on the other.

Alice and Evie are almost the same size.

Of course Gluten Free...this time it wasn't so tasty.  I was just happy there was a cake. :)

Natalie provided the game for the celebration....Pin The Smile on Evie.  

Natalie came up with this on her own, it's seems as though this game is a new birthday tradition for us now...originated from Grandmother Fish.  When she made it we hadn't decided to celebrate the two girls' birthdays together.  Next year we will play Pin the Broviac Line on Alice ;)

August 6, 2013--Admit to ICS

Alice was admitted to ICS today, in preparation for her GI biopsies.  She was fasting for the procedure, minus chicken broth and Miralax bottles...ahhh!  The first day was hard for her and of course into the second.  The morning of the procedure she told the Bone Marrow Doctors that the cooking ladies were gone.  She was frustrated that the cafeteria wouldn't send her food.

We had explained to her the facts about her test and the need to have an empty belly.  She translated that into the cooking ladies being gone.

Thankfully we had some awesome activities to keep her distracted long enough to get her through.

She colored and stenciled more than ever before :)

I had my hands full giving her showers and baths all day and night...her bottom was sore from the diarrhea and requested to be washed with warm soapy water rather than wiped.  I was more than happy to do that for her.  We had some great times together.

She tucked her napkin in so nicely.  Yummy chicken broth!

Alice and the dog Annie.

I was sure to wipe down the couch, floor and Alice when our friendly visitor left.

Hooray for new Minnie Mouse pjs.

She was pretending to cook some mashed potatoes for me.

August 7, 2013--Scope/GI biopsy

Today at noon Alice had some biopsies taken of her stomach, small intestine and large intestine. The procedure went well and from an initial standpoint it looked great.  She cooperated so well and as we were walking down to surgery, she said, "Mom am I going to be Sleeping Beauty?"
 I told her she would be, and when she woke I would have something yummy for her to eat.  This made her so happy.  She is so precious, I love her.

On our way to the second floor for surgery.

Waiting in an isolation room.

Mom and Alice

She took this picture of the ceiling.

One last picture before she feel asleep.

August 8, 2013--Happy Birthday Alice/Biopsy Results/Home

Alice was so happy to call the cooking ladies and order a big yummy breakfast.  She had eggs, sausage, hash browns, and juice.
When she woke up she said, "Mom are you going to tell me happy birthday?"  I told her happy birthday all day long.  I asked her what she wanted for her birthday and she said, "I want the nurses to sing happy birthday to me."  The nurses did just that.  It was great.  They wore silly hats and filled her room...she was surprisingly shy and wouldn't look at them...after all it was her request.

Biopsy results indicate that Alice has active Grade 2 Gaft vs. Host Disease.  This didn't come as a surprise to us as we suspected it.  Her treatment for the GVHD is the same as the temporary treatment for HLH.

Tomorrow she will start a new regimen of treatment, increased cyclosporine and steroids.

Brenda, NP came in to inform Alice that she could go home a day early, Alice told her that she would rather stay in the hospital.  I quickly jumped in and ensured Brenda that we would be taking her offer and packing our bags.  Later Alice said she wanted to go home after all.  I love that she loves being in the hospital...her days in the hospital are not over and it's much easier when it's not a fight to be there.

More pet therapy...Alice asked the volunteer not to have the puppy on her just never know.  This puppy is Roxy and she danced for Alice.  It was very cute.

Singing Nurses.
Alice wanted a picture of me with a silly hat.


Happy to be home.

Before even going inside she went straight to the garden and filled her shirt with tomatoes...Alice and Evie's favorite snacks.  They can eat them all day long.  And yes it's very normal for Evie to be under dressed.  She dresses and undresses herself these days.